Familial Cancer

, Volume 9, Issue 2, pp 213–220 | Cite as

Female BRCA mutation carriers with a preference for prophylactic mastectomy are more likely to participate an educational-support group and to proceed with the preferred intervention within 2 years

  • Karin M. Landsbergen
  • Judith B. Prins
  • Yvonne J. L. Kamm
  • Han G. Brunner
  • Nicoline Hoogerbrugge
Article

Abstract

Women with a BRCA mutation face a complex choice between breast cancer surveillance and prophylactic mastectomy. We determined risk management preferences shortly after genetic test disclosure and mastectomy status after a median observation period of 2 years. The effect of an educational-support group on the realisation of risk management preference was explored. We included 163 newly disclosed BRCA mutation carriers with no history of cancer, whose breast cancer risk management preferences were recorded. All carriers were offered the opportunity to participate an educational-support group. Mastectomy status was checked after a median observation period of 2 years. Of the total sample, 27% had an initial preference for mastectomy and 48% attended an educational-support group. After a median observation period of 2 years, 30% of the total sample had undergone prophylactic mastectomy. Of the women with a preference for surveillance, 90% of educational-support group attendees and 88% of the other mutation carriers, were still under surveillance. The number of women with a preference for mastectomy who actually had a mastectomy performed, was significantly higher in the group that attended an educational-support group as compared to those who did not, 89% and 63% respectively (OR 4.8, P = 0.04). Strong predictors for prophylactic mastectomy within 2 years were younger age and prior preference for mastectomy (R2 = 0.57). Nearly all BRCA mutation carriers proceed with their initial choice for surveillance or prophylactic mastectomy. The study provides presumptive evidence that educational-support group participants decide to undergo prophylactic mastectomy earlier than non-attendees.

Keywords

BRCA Breast cancer risk management Breast cancer surveillance Educational-support group Oncology Prophylactic mastectomy 

References

  1. 1.
    Antoniou A, Pharoah PD, Narod S et al (2003) Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet 72:1117–1130CrossRefPubMedGoogle Scholar
  2. 2.
    Brose MS, Rebbeck TR, Calzone KA et al (2002) Cancer risk estimates for BRCA1 mutation carriers identified in a risk evaluation program. J Natl Cancer Inst 94:1365–1372PubMedGoogle Scholar
  3. 3.
    Chen S, Parmigiani G (2007) Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol 25:1329–1333CrossRefPubMedGoogle Scholar
  4. 4.
    Ford D, Easton DF, Stratton M et al (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The breast cancer linkage consortium. Am J Hum Genet 62:676–689CrossRefPubMedGoogle Scholar
  5. 5.
    Struewing JP, Hartge P, Wacholder S et al (1997) The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med 336:1401–1408CrossRefPubMedGoogle Scholar
  6. 6.
    Thompson D, Easton DF (2002) Cancer incidence in BRCA1 mutation carriers. J Natl Cancer Inst 94:1358–1365PubMedGoogle Scholar
  7. 7.
    Chen S, Iversen ES, Friebel T et al (2006) Characterization of BRCA1 and BRCA2 mutations in a large United States sample. J Clin Oncol 24:863–871CrossRefPubMedGoogle Scholar
  8. 8.
    Bermejo-Perez MJ, Marquez-Calderon S, Llanos-Mendez A (2007) Effectiveness of preventive interventions in BRCA1/2 gene mutation carriers: a systematic review. Int J Cancer 121:225–231CrossRefPubMedGoogle Scholar
  9. 9.
    National Institute for Health and Clinical Excellence (NHS) NICE Guideline Familial Breast Cancer. 25-10-2006Google Scholar
  10. 10.
    Warner E, Plewes DB, Hill KA et al (2004) Surveillance of BRCA1 and BRCA2 mutation carriers with magnetic resonance imaging, ultrasound, mammography, and clinical breast examination. JAMA 292:1317–1325CrossRefPubMedGoogle Scholar
  11. 11.
    Hartmann LC, Schaid DJ, Woods JE et al (1999) Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 340:77–84CrossRefPubMedGoogle Scholar
  12. 12.
    Meijers-Heijboer H, van GB, van Putten WL et al (2001) Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med 345:159–164CrossRefPubMedGoogle Scholar
  13. 13.
    Rebbeck TR, Friebel T, Lynch HT et al (2004) Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE study group. J Clin Oncol 22:1055–1062CrossRefPubMedGoogle Scholar
  14. 14.
    Lerman C, Hughes C, Croyle RT et al (2000) Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med 31:75–80CrossRefPubMedGoogle Scholar
  15. 15.
    Meijers-Heijboer EJ, Verhoog LC, Brekelmans CT et al (2000) Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation. Lancet 355:2015–2020CrossRefPubMedGoogle Scholar
  16. 16.
    Metcalfe KA, Snyder C, Seidel J et al (2005) The use of preventive measures among healthy women who carry a BRCA1 or BRCA2 mutation. Fam Cancer 4:97–103CrossRefPubMedGoogle Scholar
  17. 17.
    Scheuer L, Kauff N, Robson M et al (2002) Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J Clin Oncol 20:1260–1268CrossRefPubMedGoogle Scholar
  18. 18.
    Botkin JR, Smith KR, Croyle RT et al (2003) Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A 118A:201–209CrossRefPubMedGoogle Scholar
  19. 19.
    Foster C, Watson M, Eeles R et al (2007) Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up. Br J Cancer 96:718–724CrossRefPubMedGoogle Scholar
  20. 20.
    Bleiker EM, Grosfeld FJ, Hahn DE et al (2001) Psychosocial care in family cancer clinics in The Netherlands: a brief report. Patient Educ Couns 43:205–209CrossRefPubMedGoogle Scholar
  21. 21.
    Meiser B, Butow P, Friedlander M et al (2000) Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer. J Clin Oncol 18:2250–2257PubMedGoogle Scholar
  22. 22.
    Lostumbo L, Carbine N, Wallace J et al. (2004) Prophylactic mastectomy for the prevention of breast cancer. Cochrane Database Syst Rev 4:CD002748. ReviewGoogle Scholar
  23. 23.
    Meijers-Heijboer H, Brekelmans CT, Menke-Pluymers M et al (2003) Use of genetic testing and prophylactic mastectomy and oophorectomy in women with breast or ovarian cancer from families with a BRCA1 or BRCA2 mutation. J Clin Oncol 21:1675–1681CrossRefPubMedGoogle Scholar
  24. 24.
    van Dijk S, Otten W, Zoeteweij MW et al (2003) Genetic counselling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment. Br J Cancer 88:1675–1681CrossRefPubMedGoogle Scholar
  25. 25.
    van Dijk S, van Roosmalen MS, Otten W et al (2008) Decision making regarding prophylactic mastectomy: stability of preferences and the impact of anticipated feelings of regret. J Clin Oncol 26:2358–2363CrossRefPubMedGoogle Scholar
  26. 26.
    van Oostrom I, Meijers-Heijboer H, Lodder LN et al (2003) Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol 21:3867–3874CrossRefPubMedGoogle Scholar
  27. 27.
    Beattie MS, Crawford B, Lin F et al (2009) Uptake, time course, and predictors of risk-reducing surgeries in BRCA carriers. Genet Test Mol Biomarkers 13:51–56CrossRefPubMedGoogle Scholar
  28. 28.
    Hoogerbrugge N, Kamm YJ, Bult P et al (2008) The impact of a false-positive MRI on the choice for mastectomy in BRCA mutation carriers is limited. Ann Oncol 19:655–659CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Karin M. Landsbergen
    • 1
    • 4
  • Judith B. Prins
    • 2
  • Yvonne J. L. Kamm
    • 3
  • Han G. Brunner
    • 1
  • Nicoline Hoogerbrugge
    • 1
    • 3
  1. 1.Department of Human GeneticsRaboud University Nijmegen Medical CentreNijmegenThe Netherlands
  2. 2.Department of Medical PsychologyRaboud University Nijmegen Medical CentreNijmegenThe Netherlands
  3. 3.Department of Medical OncologyRaboud University Nijmegen Medical CentreNijmegenThe Netherlands
  4. 4.849 Department of Human GeneticsRadboud University Nijmegen Medical CentreNijmegenThe Netherlands

Personalised recommendations